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ALS and Associated Web PagesCompiled By: Steve Weekes ([email protected])
(Main Sources: Steve Shackle and Steve Holly)
ALS INFORMATION WEB SITES:
ALS DigestIf you have not already done so, subscribe to Bob Broedel's excellent ALS Digest. This open forum digest includes feedback from People with ALS /MND, their caregivers, doctors, researchers and others with information pertinent to ALS/MND.To subscribe to the “ALS Digest”, please send e-mail to:[email protected] (Bob Broedel) or contact Bob Broedel: P.O. Box 20049, Tallahassee, FL 32316 USAArchived Issues at: http://www.glnicholas.com/
And Also At: http://home.earthlink.net/~jakesan/pages/alsdig.html (Doug’s Beat ALS)And Also At: http://212.120.112.230/~digest/
http://health.oldeman.net http://cc4144-a.ensch1.ov.nl.home.com/~digest
ALS Advocacyhttp://pages.prodigy.com/ALSPROD/A regularly updated site that follows pharmaceutical and scientific advances in the treatment of ALS/MND plus information on changes in legislation and other topics.
The ALS Association – USA – National Office27001 Agoura Road, Suite 150Calabasas Hills, CA 91301-5104TEL (818) 880-9007FAX (818) 880-9006TEL (800) 782-4747 (Patient Hot Line)E-Mail: [email protected] review new and continuing grants:http://www.alsa.org/research/funded.cfmScientific Research Program:http://www.alsa.org/research/progsci.cfmClinical Management Research Program:http://www.alsa.org/research/progcm.cfm
International Alliance of ALS/MND Associationshttp://www.alsmndalliance.orgSteve Shackle’s Site – Excellent Information & Hope – This is a MUST Read!!!
Anti-Oxidants, Medications, Supplements & Liver Functionhttp://www.goulburn.net.au/~shack/E-mail: [email protected] ALS Reporter (“Mikki Lawson’s Site”)http://www.tapa.com/ALS/resources.htmlALS Doctor’s Guidehttp://www.pslgroup.com/ALS.HTMALS Doctor’s Guide - New Drugs & Informationhttp://www.pslgroup.com/DOCGUIDE.HTM ALS Doctor’s Guide - PLS Consultinghttp://www.pslgroup.com/ALS.HTM Project ALS - Headed up by PALS Jenifer Estess (NYC)The email address for Valerie Estess is: [email protected]: (800) 603-0270http://www.project-als.org/
Team ALShttp://www.geocities.com/teamals/index.htmSue Zoltner’s – Team ALS Million Dollar Marathon – Rochester NYhttp://home.rochester.rr.com/zoltner/index.html
Hope For ALShttp://www.hopeforals.com/
ALS Therapy Development Foundation218 Mill StreetNewton, Massachusetts 02460 Phone: (617) 796-8826Fax: (617) 796-9652The e-mail address for James Heywood is: [email protected]
Elizabeth McEnanyALS Therapy Development Foundation44 Glen Ave, Newton Centre, MA 02459e-mail: [email protected]://www.als-tdf.org/
The ALS March of Faceshttp://www.march-of-faces.org/“Brick By Brick” – ALS March of Faces’ On-Line Newsletterhttp://www.march-of-faces.org/BBB/3-3/banner.html
Northern Kentucky AngeLS of the Bluegrasshttp://home.earthlink.net/~louangels/index.html
Ride 4 Life
http://www.rideforlife.com/Kyle Hahn's ALS Infobahnhttp://www.kylehahn.com/Steve Holly’s Sitehttp://www.als-mnd.comwww.steveholly.com/Focus On ALS – (“Debbie Tope’s Site”)http://www.focusonals.com/ALS Network – (“Cheryl Mathews-Prock Site”)http://alsnetwork.en.com/index.htmlThe ALS Survival Guide (“Doug Eshleman’s Site”)http://www.lougehrigsdisease.net/Doug’s Beat ALS (“Doug Jacobson’s Site”) http://home.earthlink.net/~jakesan/ALS: A Guide for Patients - by Dr. Eric Livingston, M.D. (Part of “Doug Jacobson's site”) http://home.earthlink.net/~jakesan/pages/guide1.htmlAl's ALS Resource Page - Internet portal for the ALS communityhttp://members.aa.net/~dusta/AARP.htm Paul’s MND Pages – (“Paul Vineberg's Site”)http://www.users.bigpond.com/paulfran/Contents.htmProfessor Stephen Hawking’s SiteText Only Version: http://www.hawking.org.uk/text/index.htmlGraphic Version: http://www.hawking.org.uk/home/hindex.htmlSteve Killeen’s Sitehttp://www.iol.ie/~killeen/stevemnd/stevehom.htm ORhttp://www.iol.ie/%7Ekilleen/stevemnd/stevehom.htmRaising Hope - ALS Survival Projecthttp://rampages.onramp.net/~jpyenom/Raising Hope - ALS Survival Project – Medical Alertshttp://rampages.onra/~jpyenom/medical_alerts.htmlMND FAQ – MND Association of Australiahttp://home.vicnet.net.au/~mndaust/faq.htmlALS Hope Chesthttp://www.alshopechest.orgALS Pin Pointhttp://members.aol.com/alspinpoint/index.htmlTurning Points In ALSPurpose is to provide stories from PALS (People with ALS) and care giversabout turning points in their illness and how they handled these issuesso others can find information, help, and encouragement.http://www.redrival.com/wsphillips/tpals.htmMotor Neuron Disease (MND) – A Layperson’s Guidehttp://home.intekom.com/amh/mnd.htmThe Ticket to Life Organization - ALS/MND Website (UK)This Organization’s Charter is to Test commonand Approved Drugs and Release the Results!
http://www.tickettolife.org/Surviving, Living, and Thrivinghttp://www.u.arizona.edu/~dhilz/PROJECT.HTMPractical Tips for Living with ALShttp://members.xoom.com/liveletdie/home.htmlAmyotrophic Lateral Sclerosis (ALS)http://www.familyvillage.wisc.edu/lib_als.htm#WebBasic Neurology Made Easy – By Brian Glodtwww.fortunecity.com/greenfield/buzzard/387ALS Site for Kids – A Virtual Journeyhttp://msnhomepages.talkcity.com/supportst/foxyrayj/index.html“What is ALS?” For Kids – Part of “The ALS March of Faces” Web SiteDesigned By Kyle Hahn and Terry Frankhttp://www.march-of-faces.org/KIDS/moe1.htmlChristian ALS Support (“Lean on Jesus”)Spirit Enhancement of the ALS/MND, MS & MD Communitieshttp://home.earthlink.net/~russgamble/New Hope Discoveries, Inc. – Diagnostic & Treatment Centers – Pahrump, Nevadahttp://www.newhopediscoveries.com/E-Mail: [email protected] is not Fatal – William Kibbie’s Web Sitehttp://home.earthlink.net/~bkibbie/Jim "Catfish" Hunter ALS Foundationhttp://www.catfishhunterals.org/
ALS/MDA Clinic – Houston Tx – Baylor School of Medicinehttp://www.bcm.tmc.edu/neurol/struct/als/als1.htmlALS/MND Trials & Research – Baylor School of Medicinehttp://www.bcm.tmc.edu/neurol/research/als/als1.htmlLes Turner ALS Research Laboratory (Northwestern University Medical School)http://www.lesturnerals.org/research.htmLes Turner ALS Foundation3325 Main StreetSkokie, IL 60076TEL (888) ALS-1107TEL (847) 679-3311FAX (847) 679-9109E-Mail: [email protected] (Claire Owen)
The John Bevan MND Research Unit - Centre for the Study of Health, Brunel Universityhttp://http1.brunel.ac.uk:8080/~hssrsdn/alsig/als_rsrc.htmThe Edelson Center for Environmental & Preventive MedicineALS Page At: http://www.edelsoncenter.com/als_case.htm ORHomepage At: http://www.ephca.com/New York Online Access to Health (NOAH) Neurological and Neuromuscular Disordershttp://www.noah.cuny.edu/neuro/neuropg.html#ALS
Med Web Plushttp://www.medwebplus.com/subject/Amyotrophic.htmlDrug InfoNet / Infolink – ALS Site (Information about ALS Medications)http://www.druginfonet.com/lougerig.htmJefferson Health Systemhttp://www.jeffersonhealth.org/diseases/neuro/als.htmUniversity of Chicago – Department of Neurologyhttp://ucneurology.uchicago.edu/Neurological_Disorders/NeuroMuscular/ALS/als.htmlUniversity of Miami – ALS Clinical & Research Centerhttp://www.miami-als.org/National Institute of Neurological Disorders & Stroke (NINDS)Homepage At: http://www.ninds.nih.gov/ALS Site At: http://www.ninds.nih.gov/patients/Disorder/als/als.htmWorld Federation of Neurology - ALS/MND Site At:http://www.wfnals.orgCriteria for the Diagnosis of ALS: http://www.wfnals.org/Articles/elescorial1998criteria.htmUS Food & Drug Administration (FDA) – ALS/MND Site At:http://www.fda.gov/fdac/features/796_als.htmlALS Defined – American Academy of Family PhysiciansBy Dr. Anne D. Walling M.D. – University of Kansas School of Medicine, Wichitahttp://www.aafp.org/afp/990315ap/1489.html Washington University School of Medicine (St. Louis, MO)Neuromuscular Disease Centerhttp://www.neuro.wustl.edu/neuromuscular/http://www.neuro.wustl.edu/neuromuscular/motor.htmlhttp://www.neuro.wustl.edu/neuromuscular/spinal/als.htm
Yale University – ALS/MDA Programhttp://info.med.yale.edu/neurol/CNeurophysiol/Welcome.htmlNew England Medical Center (Boston) – Munsat ALS Clinichttp://www.nemc.org/neuro/munsat/home6.htmUniversity at Buffalo Librarieshttp://ublib.buffalo.edu/libraries/units/hsl/ref/guides/als.htmlNORD – ALS/MND Site at:http://www.stepstn.com/cgi-win/nord.exe?proc=Redirect&type=rdb_sum&id=57.htm
Cleveland Clinic Foundationhttp://www.ccf.org/ed/pated/events/als.htm
Neuropathology Digest - Abstracts of recent experiments regarding potential treatments for ALS and related diseases:The Neuropathology Digest is updated monthly.http://www.grimshaw.org/neuropathology/indexn.html Aventis Pharmaceuticals – Manufacturers of “Rilutek” (Riluzole) Tablets
Rhône-Poulenc Rorer Pharmaceuticals Inc.http://www.alsinfo.com/index.stm
Sanofi-Synthelabo - Manufacturers of “Xaliproden” Tabletswww.sanofi-synthelabous.com
ALS SOCIETIES, SUPPORT GROUPS & PUBLICATIONS:International Alliance of ALS/MND Associationshttp://www.alsmndalliance.org ALS Society of Canada220 - 6 Adelaide Street EastToronto, Ontario, M5C 1H6 CANADATEL 416-362-0269TEL 800-267-4ALS (toll-free in Canada)FAX 416-362-0414E-Mail: [email protected]://www.als.ca ALS Society of Nova Scotiahttp://reseau.chebucto.ns.ca/Libraries/HCRL/CommunityDB/ALS.htmlALS Society of British Columbiahttp://www3.telus.net/alsbc/ALS Society of Albertahttp://www.cadvision.com/societya/ ALS Association – USA (32 Chapters Total):http://www.alsa.orgALS Association – Chapter Informationhttp://alsa.org/serving/chapter.cfmALS Association – Greater New York Chapterhttp://www.als-ny.org/ALS Association – North Texas Chapter http://www.star-telegram.com/homes/alsdalsftw/ALS Association – Tampa Bay Chapterhttp://www.als-tampabay.org/ALS Association – Greater Philadelphia Chapterhttp://www.als-phila.org/ALS Association – Nation’s Capital Area Chapter (DC & Maryland)http://www.alsa -ncac.org/ ALS Association – Massachusetts Chapterhttp://www.als-ma.org/ALS Association – Ohio Chapters ALS Ohio - http://www.alsohio.org/ Northeast Ohio Chapter - http://www.alsaohio.org/
ALS Association – Minnesota Chapterhttp://www.thehealthfund.org/als.htmlALS Association – Georgia Chapterhttp://www.alsaga.orgALS Association – Greater St. Louis Chapterhttp://alsa.org/serving/stlouis_chapter.cfmALS Association – Southeast Wisconsin Chapterhttp://alsa.org/serving/wi_chapter.cfmhttp://www.se-wis-als.org/ALS Association – Kansas & Western Missouri Chapter – Keith Worthington Chapterhttp://www.crn.org/als/ALS Association – West Michigan Chapterhttp://alsa.org/serving/westmi_chapter.cfmALS Association – Rocky Mountain Chapter (Colorado)www.alsaco.org
NW Wisconsin ALS Support Group – Chippewa Falls, WisconsinGroup leader: Sally Krohne-mail: [email protected]: (715) 723-1694http://cvbc.net/als/
The ALS Patient Care Database – ALS C.A.R.E. ProjectThe ALS C.A.R.E. (Clinical Assessment, Research and Education) Project invites health professionals to participate in creating a national database on ALS to collect clinical information on disease progression, and diagnostic and treatment approaches and their outcomes.The ALS C.A.R.E. Project is sponsored by an unrestricted grant from Aventis Pharma and by a grant from the ALS AssociationALS C.A.R.E. is also endorsed by the ALS Interest Group of the World Federation of Neurology.http://www.outcomes.org/als/The European ALS Health Profile Study – University of OxfordA Similar Study to the “The ALS Patient Care Database” - European version of Studyhttp://hsru.dphpc.ox.ac.uk/als.htm
Motor Neurone Disease (MND) Association (UK) http://www.businessconnections.com/mnd/mnd.htm
MND Association of Western Australiahttp://perth.dialix.oz.au/~mndawa/mndatop.htmlMND Association of Australiahttp://home.vicnet.net.au/~mndaust/MND Association of New South Waleshttp://www.netspace.net.au/~mndansw/MND Association of Victoria
http://home.vicnet.net.au/~mndvic/Neurological Resource Centre (NRC) – South Australiahttp://www.span.com.au/nrc/index.htmlAustralians and New Zealanders subscribe to OZPALS at:http://[email protected] Brisbane OZPALS - Australia Keith’s OZPALS Homepage – “The Sunbeam Family”http://www.petrie.starway.net.au/~sunbeams/OZ PALS – Network of Australian Persons with ALS/MNDOZPALS is the Australian and New Zealand network of anyone touched byALS/MND - sufferers, caregivers, family members, friends, medical fraternity.http://ozpals.8m.com/
MND Association of New Zealandhttp://www.nzhealth.co.nz/support/motor.html
Finnish ALS – Finland Sitehttp://www.lihastautiliitto.fi/
The England MND Association – England, Wales and Northern Irelandhttp://www.mndassociation.org/index.htm
The Scottish MND Associationhttp://www.scotmnd.org.uk/index.htm Irish Motor Neurone Disease Association (IMNDA) – (“Steve Killeen’s Web Site”)http://www.iol.ie/~killeen/stevemnd/imndesc.htm ORhttp://www.iol.ie/~killeen/stevemnd/stevehom.htm ORhttp://www.iol.ie/%7Ekilleen/stevemnd/stevehom.htm
Deutsche Gesellschaft f r Muskelkranke (German Site)http://weka.rpr-cologne.de/
ADELA C.V.(Asociacion Valenciana de Esclerosis Lateral Amiotrofica) Espanol:Spanish: http://www.seker.es/adela/English: http://www.seker.es/adela/defaulti.html
AMELA (Asociacion Madrilena de ELA)http://www.servicom.es/amela/0_AMELA.HTM
Associazione Italiano Sclerosi Lateral Amiotrofia (AISLA) http://www.fausernet.novara.it/fauser/ospiti/aisla/aisla.htm
Vereniging Spierziekten Nederland (VSN) - ALS Diagnostic Support Group(Dutch Neuromuscular Disease Association)Dutch: http://www.vsn.nlEnglish: http://www.vsn.nl/english.htm
The Danish Muscular Dystrophy Association Dutch: http://www.muskelsvindfonden.dk/English: http://www.muskelsvindfonden.dk/engelsk.html
Belgian ALS Liguehttp://uc2.unicall.be/ALS/
Muscular Dystrophy Association (MDA) - Homepage3300 East Sunrise DriveTucson, AZ 85718TEL (800) 572-1717TEL (520) 529-2000FAX (520) 529-5417E-Mail: [email protected]://www.mdausa.orgMDA – ALS Information, Articles, & Materialshttp://www.mdausa.org/disease/als.htmlMDA – “ALS Newsletter”http://www.mdausa.org/publications/als/index.htmlMDA – “Quest” Magazinehttp://www.mdausa.org/publications/Quest/
ALS Quarterly Journalhttp://www.dunitz.co.uk/cgi-bin/index2.cgi?journal=1
The Primary Lateral Sclerosis (PLS) Web Sitehttp://www.geocities.com/freyerse/index.html
PLS Newsletter – Frank Levy Ph.D.EDITOR - Frank Levy, Ph.D., 101 Pinta Court, Los Gatos, CA 95030Telephone: (408) 356-8227e-mail: [email protected]://www.orthomed.com/pls.htm
Winter 1998 http://www.orthomed.com/winter.htmSummer 1999 http://www.orthomed.com/summer99.htmFall 1999 http://www.orthomed.com/plsf99.htmWinter 1999 http://www.orthomed.com/pls154.htm
ALS CHAT ROOMS:
Steve Holly’s ALS Chat Roomhttp://www.als-mnd.com/echat42/public/index.htmlhttp://www.steveholly.com/echat41/public/index.html
Paul’s MND Pages – Chat Roomhttp://www.users.bigpond.com/paulfran/chat.htmJer’s PALS and CALS Meeting Roomhttp://www.geocities.com/HotSprings/Falls/palschat.htmJoe’s Chat Roomhttp://www.homestead.com/joseph20000/front.htmlJim Compton’s Chat Roomhttp://faculty-staff.ou.edu/C/Jimmie.D.Compton-1/Chat2.htmlOZPALS Chat Room - Australiahttp://www.petrie.starway.net.au/~sunbeams/Massachusetts General Hospital (MGH) - ALS Chat Roomhttp://neuro-mancer.mgh.harvard.edu/echat42/ALS/Massachusetts General Hospital (MGH) – Caregiver Chat roomhttp://neuro-mancer.mgh.harvard.edu/echat42/Caregiver_Support/Shelia’s ALS Support Spot Chat RoomA chat room open on Wed and Fri at 3pm ESTChat Room: http://www.delphi.com/powerpals/chatRegister At: http://www.delphi.com/powerpals/startPaul’s PALS - Yahoo ALS Chat Roomhttp://clubs.yahoo.com/clubs/paulspalsRachael’s ALS Room – Chat For Young People Affected By ALShttp://communities.msn.com/RachaelsALSRoom&naventryid=106Ride 4 Life Chat Roomhttp://www.rideforlife.com/live_chat.htmLiving with ALS E-Group Chat Roomhttp://www.egroups.com/ChatlistName=living-with-alsALS or MND Yahoo Clubhttp://clubs.yahoo.com/clubs/alsormndALS Alternative Medicine Yahoo Clubhttp://clubs.yahoo.com/clubs/alsalternativemedicine
ALS FORUMS and BULLETIN BOARDS:
Living With ALS E-Group Forumhttp://www.egroups.com/group/living-with-als/Doug’s Discuss ALS Bulletin Boardhttp://www.lougehrigsdisease.net/disc6_frm.htmFred’s Yahoo ALS Bulletin Boardhttp://messages.yahoo.com/bbs?action=m&board=8313The ALS Forum (Hosted by “Ride 4 Life”)http://www3.bravenet.com/forum/sho?userid=IK90372Doug’s ALS Message Boardhttp://messages.yahoo.com/bbs?action40d0&mid=1&g=1 Steve’s ALS Message Board
http://www.yourbbs.com/v2/index.cgi?bbs=4727McSalmon’s ALS Support Spothttp://www.delphi.com/dir-login/index.asp?g=359014ALS Message Board – (Health Boards.com) Message Boards for Health Related Topics http://www.healthboards.com/als/ALS Network Forumhttp://alsnetwork.en.com/disc1_toc.htmRaising Hope - ALS Survival Project Forumhttp://rampages.onramp.net/~jpyenom/ALS Newsgroupnews:sci.med.diseases.alsNewsgroup: sci.med.diseases.als
Cleveland Clinic Foundation – Neurology and Neurosurgery Forumshttp://www.medhelp.org/Forums/neuro/wwwboard.htmlCleveland Clinic Foundation – ALS Forumhttp://www.medhelp.org/mhli/search6.exe?jstart=1&keywords=AMYOTROPHIC+LATERAL+SCLEROSIS&Submit=Submit
Massachusetts General Hospital (MGH) Neurology Web Forumshttp://www.neruo-www.mgh.harvard.eduMGH - ALS Web Forum – direct address (New Forum – As of 1/15/00):http://neuro-mancer.mgh.harvard.edu/cgi-bin/forumdisplay.cgi?action=topics&forum=ALS&number=3&DaysPrune=10&LastLogin=MGH - ALS Web Forum - direct address (Old Forum – Archives 10/15/97 - 1/15/00):http://neuro-www.mgh.harvard.edu/forum/alsmenu.html
See the Strength-L Digest and seriously consider joining in the Strength-L discussions. They can be fun, informative, inspiring and often enlightening. Strength-L is an uncensored forum for people with disabilities, doctors, researchers, caregivers and others wishing to discuss any topic frankly and openly. To subscribe to the Strength -L Digest e-mail: [email protected] and type the word "subscribe" in the body of the message and you will be automatically added to the list. You can unsubscribe at any time but it is unlikely that you will want to.
ALS/MND Online Bulletin Boards:America Online subscribers' ALS bulletin board:Keyword "dis" or "disabilities"Select “General Discussions”Select “List Topics”Select ALS Lou Gehrig as Disease ALS bulletin board:Click on Go; Type mda forum; Read disclaimer then select Proceed, which sends you to the MDA forum. Now you can browse the library or the message sections, both of which offer information on ALS
Prodigy subscribers' ALS bulletin board:Jump Medical support bulletin board, subject: neurological, topic: ALS
CAREGIVER WEBSITES:
Web of Care – Care Giver’s Web SiteWeb page for those caring for ill or disabled at home.Information, support, and links to supplies, animated lessons in Caregiving skills, chat rooms, bulletin boards and more.http://www.webofcare.com/Family Caregiver Alliance: www.caregiver.orgALS Fact Sheet (from the “Family Caregiver Alliance”)http://www.caregiver.org/factsheets/als.htmlNational Family Caregivers Associationwww.nfcacares.orgNational Alliance for Caregivingwww.caregiving.orgToday’s Caregiver Magazine On-linewww.caregiver.comCaregivers Resourceshttp://wwcoco.com/cfs-care/Carers’ Need to Supporthttp://www.ionet.net/~oldworld/Caregivers.htmThe Caregivers Handbookhttp://www.acsu.buffalo.edu/%7Edrstall/hndbk0.htmlCare Giver Guide Book – “On Eagles Wings”http://www.freefallfactory.com/ ALS Resource Page: http://www.freefallfactory.com/resources.htmlCaregivers Bookmark Listhttp://pw2.netcom.com/%7Elehdoll/solidGOLD.htmlCaregiver Survival Resourceshttp://www.caregiver911.com/ FamilyonCallAn on-line resource for family caregiverswww.familyoncall.comFamily Village – Waisman Center, University of Wisconsin-MadisonA Global Community on the Internet for Families of Persons who have Disabilitieswww.familyvillage.wisc.edu/
ALS Association – USAhttp://www.alsa.org/research/
Massachusetts General Hospital (MGH) – Caregiver Chat Roomhttp://neuro-mancer.mgh.harvard.edu/echat42/Caregiver_Support/
INDIVIDUAL ALS/MND WEBSITES:Cheryl Mathews-Prock's Web Site: http://alsnetwork.en.com (“ALS Network”)Debbie Tope’s Web Site: http://www.focusonals.com/ (“Focus On ALS”)Doug Eshleman's Web Site: http://www.lougehrigsdisease.net/ (“ALS Survival Guide”)Paul Vineberg's Site: http://www.users.bigpond.com/paulfran/Contents.htm (“Paul’s MND Pages)Doug Jacobson's ALS Web Site: http://home.earthlink.net/~jakesan/ (“Doug’s Beat ALS”)Mikki Lawson Web Site: http://www.tapa.com/makahiki.html (“The ALS Reporter”)Steve Killeen's Web Site: http://www.iol.ie/~killeen/stevemnd/stevehom.htm (“IMNDA”)Kyle Hahn's Page: http://www.kylehahn.com/ (“ALS Infobahn”)Robb Thompson’s Homepage: http://home1.gte.net/thompsrj/ (“ALS Informer”)Roy Smith’s Page: http://www.iinet.com/users/royden/ (“The Mercury Connection”)William Kibbie’s Page: http://home.earthlink.net/~bkibbie/ (“ALS is not Fatal”)The Nicholas Family Homepage: http://www.glnicholas.com/ (“ALS Digest” Archives)Al's ALS Resource Page: http://members.aa.net/~dusta/AARP.htmJeff’s ALS Resources Page: http://www.speakeasily.com/alslinks.html
Jeff Pines’ Home Page: http://www.enteract.com/~jmp/index.html
John McMullen’s Homepage: http://www.mindspring.com/~jmcmulln/als.htmlRichard Gelinas’ Page: http://home1.gte.net/cappanut/index.htmJon Phillips’s Page: http://member.aol.com/ jphill1492/page/index.htm Leroy Kramer's Page: http://home.pacbell.net/ranger-1/Dave Mace’s Web Page: http://community-2.webtv.net/jdcane/MyHomePage/Jim Compton’s Homepage: http://faculty-staff.ou.edu/C/Jimmie.D.Compton-1/Leonard (Lenny) Brunner's Page: http://home.talkcity.com/KarmaWay/leo-11/Dean Chioles' Homepage: http://www.shoptown.com/dean/Default.htmPaul’s PALS Homepage: http://msnhomepages.talkcity.com/SupportSt/shimbleshanks/Robin Balsdon’s Homepage: http://www.users.bigpond.com/rbalsdon/index.htmlMichael Zaslow’s Page: http://www.zazangels.com/zazangels.html
www.michaelzaslow.comLou Gehrig Tribute: http://msnhomepages.talkcity.com/StudentUnion/phenemoe/index1.htmlKarl Boyken’s Page: http://soli.inav.net/~kboyken/als.htmlDeliamc’s Home Page: http://www.geocities.com/HotSprings/2130/Angelo Sciulli’s Web Site: http://www.scnature.com
Marion Lippert’s Web Site: http://www.ldeem.com/Paul Johnson’s Web Site: http://home.earthlink.net/~alsalert/index.html (“ALS Alert”)Larry Carlson’s Page: http://home.talkcity.com/WorkoutPl/sunshines23/
Pam’s Page: http://www0.delphi.com/family/pamals.htmlPam Carlson: http://members.delphi.com/pscarlson
Gary Nicklas’ Homepage: http://www.netset.com/~gnicklas/Jerry’s (Jer’s) Homepage: http://www.geocities.com/HotSprings/Falls/9451/
Mutley’s MND Page (Steve Brown): http://members.tripod.com/~MNDMutley/index.htmlMingo Montellano’s Homepage: http://home.talkcity.com/CarpoolLn/mingo4/index-3.htmlTom Brooks’ Web Site: http://www.tlbrooks.com/Billy Curries Homepage: http://homepage.dtn.ntl.com/william.currie1/ (Spiritual Site)The Crane Family Homepage: http://pta6000.pld.com/cranefam/ (Spiritual Site)George Breedloves’ Web Site: http://home.rochester.rr.com/breedlove/george/index.htmBrent Dewar’s Web Site: http://www.cadvision.com/bdewar/Greg Hicok’s Homepage: http://hometown.aol.com/palsfl41/home.htmJoe’s Homepage: http://www.homestead.com/joseph20000/front.htmlDon Moore’s ALS Page: http://members.aol.com/pjungles/PjunglesBegin.htmlDiana’s Homepage: http://www.geocities.com/RainForest/2055/index.htmlDiane’s ALS Web Site: http://members.xoom.com/liveletdie/home.htmlMarc Reynolds’ Homepage: http://www.execulink.com/~rreynold/ Ken Stone's Home Page: http://onward.to/kenstonesworldALS Trail Guide: http://pages.prodigy.net/dnd/Judy Repass’ Homepage: http://members.aol.com/mrsre/index.htmlThe Smiths – Stan’s Pages: http://www.scv.net/~stan/ Incredible People Magazine: http://www.incrediblepeople.com/ (General Inspiration)David Mackenzie’s Page: http://www.iniaccess .net.au/~davidmac/ Jason Becker’s Homepage: http://www.intres.com/jasonbecker/Steve Fowler’s Web Site: http://www.emdbd.com/stevefowler/
Barbara’s Homepage: http://homepages.which.net/~b.keenan/.html (invalid)Chris Davis’ ALS Page: http://www.sfo.com/~hulaman/als.html (invalid)Scott Dawson's ALS Page: http://www.interlog.com/~srdawson/alsintro.htm (invalid)Bob Perron's ALS Magazine: http://www.idir.net/~rlperron/als.htm (invalid)Sue's Page: http://www.gothweb.co.uk/Tufty (invalid)
Keith Sunbeam’s Homepage: http://www.petrie.starway.net.au/~sunbeams/ (Australia)Mike Baird’s ALS Homepage: http://www.cadvision.com/mbaird/ (Alberta Canada)Birger’s Heaven: http://home5.inet.tele.dk/bbj/als.htm (Denmark)Per-Ivar Pettersen’s Page: http://www.geocities.com/HotSprings/Spa/9932/engind.html
(Scandinavian – English Version) Jeanet Vlist Kroft’s Web Site: http://home.planet.nl/~vlist008 (in Dutch)Javier Ruiz Gimenez' Page: http://bbs.seker.es/~adela (“ADELA” – in Spanish)Jean-Marie Quiquempois’ Page: http://www.geocities.com/BourbonStreet/Delta/3573/ (in French)Aase Samsonsen’s Web Site: http://home.sol.no/~asamsons/front%20page.htm
(Norwegian – English Version)
Eric Edney does not have a website yet but he has managed to control the symptoms of his ALS. For information about his progress and regimen you can e-mail him at: [email protected] Peter Ganzel’s page: “A Potential Cause of ALS”:http://members.aol.com/pganzel/my.html
"A Potential Cause of ALS" by Peter Ganzel is worth reading. Some of the ideas may initially appear unorthodox but the article is well presented and the results achieved by Peter are impressive. The e-mail address from which to obtain the article (progress regularly updated) is: [email protected]
MEDICAL SEARCHES, INFORMATION & JOURNALS:How to Perform Medical Searcheshttp://www.chu-rouen.fr/documed/pmeeng.html
Conducting Medline Searcheshttp://www.ncbi.nlm.nih.gov/PubMed/ Medline Health Information - ALS Site At:http://medlineplus.nlm.nih.gov/medlineplus/amyotrophiclateralsclerosis.html
Free Medline Searcheshttp://omni.ac.uk/general-info/internet_medline.html Medical & Scientific Searches http://www.softseek.com/Education_and_Science/Science_and_Engineering/index.html Medical Information SiteContains Search Engines, Listings of hospitals, Research Updates andmany other topics that may be of interest http://www.radix.net/~mschelling/health4.htmlMedhelp InternationalContains a Medical Library and access to Research Updates and other informationcovering many branches of medicinehttp://medhlp.netusa.net/index.htm ORhttp://www.medhelp.org/Medical & Self Help Informationhttp://www.selfhelpgroups.org For General Medical Informationhttp://www.medicinenet.com/EurekalertGlobal Gateway to Science, Medicine, and Technology Newshttp://www.eurekalert.org/DoctorNet – Online Disease Linkshttp://www.comedserv.com/medlinks.htmTo Contact Medical Expertshttp://www.newswise.com/query-sm.htm Check Your Doctor Out – American Board of Medical Specialtieshttp://www.certifieddoctor.org/The Cyberspace Hospitalhttp://CH.nus.sg/CH/ch.html Idea Nurse
http://www.ideanurse.html Web of Care - Ask an Expert Servicehttp://www.webofcare.com/ Pharmacological Information Networkhttp://pharminfo.com/ RxList – The Internet Drug Indexhttp://www.rxlist.com/ “Needy Meds” – Information about Medication Assistance Programshttp://www.needymeds.com/index.htmlParticipating in Clinical Trialshttp://www.centerwatch.com/BACKGRND.HTMCenter Watch – List of Clinical Trialshttp://www.centerwatch.com/main.htmdrkoop.com – Dr. C. Everett Koop – Health & Medical Informationhttp://www.drkoop.com/Clinical Trials – Developed by the National Library of MedicineComprehensive registry of all clinical trials for serious illnesseshttp://clinicaltrials.govNeuropathology Digest – MND/ALSThis journal is a digest of recent experiments involving agents or techniques for the treatment of motor neuron disease. These pages are designed to inform the clinician of some recent experiments using agents that are currently available.http://www.grimshaw.org/neuropathology/indexn.html
DocGuide - Information For and By Doctorshttp://www.docguide.com/ Neurological Search Engine – List of Research Institutes & UniversitiesA component of The World-Wide Web Virtual Library;Cornell University Medical College - Dept of Neurology and Neurosciencehttp://neuro.med.cornell.edu/Journal of Neurology – European Neurological Societyhttp://link.springer.de/link/service/journals/00415/index.htmJournal of Neurology, Neurosurgery, & Psychiatry http://jnnp.bmjjournals.com/Archives of Neurology – American Medical Association (AMA)http://archneur.ama-assn.org/Journal of the World Muscle Society – Neuromuscular Disordershttp://www.elsevier.com/inca/publications/store/9/7/3/
US National Library of Medicinehttp://www.nlm.nih.gov/home.htmlNational Institute of Neurological Disorders & Stroke (NINDS)Homepage: http://www.ninds.nih.gov/ ALS Site: http://www.ninds.nih.gov/patients/Disorder/als/als.htm
National Institutes of Health (NIH) - Office of Dietary Supplements
Homepage: http://dietary-supplements.info.nih.govIBIDS Database: http://www.nal.usda.gov/fnic/IBIDS
Center for Neurologic Study (CNS)http://www.cnsonline.org/Comprehensive List of Neuromuscular Diseaseshttp://svt.ee.tut.fi/korpinen/disomenu.htm
InteliHealth - Home to John Hopkins Health Informationwww.intelihealth.comJohn Hopkins Medicine – Information for News Mediahttp://hopkins.med.jhu.edu/NewsMedia/newsmedi.html#textMayo Clinic Health Oasishttp://www.mayohealth.org/Reuters Health Informationhttp://www.reutershealth.com/Dept. of Clinical Neurosciences – University of Birmingham, Alabamahttp://medweb.bham.ac.uk/clin_neuro.html University of Kentucky – Neurology/Neuromuscular Programhttp://www.mc.uky.edu/neurology/muscle.htm
National Organization of Rare Diseases (NORD) homepagehttp://www.pcnet.com/~orphan/ ORhttp://www.rarediseases.org/ American Academy of Neurologyhttp://www.aan.com/American Neurological Associationhttp://www.aneuroa.org/index.htmlWorld Muscle Societyhttp://www.ior.it/wms/The Whole Brain Atlas – Keith A. Johnson M.D. and J. Alex Beckerhttp://www.med.harvard.edu/AANLIB/home.html
Institute of Neurolotoxicology and Neurological Disordershttp://www.innd.org/als.htm
Center For Complex Infectious Diseases – Dr. John Martin and Dr. Donovan Andersonwww.ccid.org/Dr. John Martin’s direct e-mail is: [email protected]
Lyme Disease Survival Guidehttp://www.execpc.com/~jbehnke/index.htmlLyme Disease Networkhttp://www.lymenet.org/Lyme Alliancehttp://www.lymealliance.org/
Lyme Disease Information Resourcehttp://www.x-l.net/Lyme/The ALS/Lyme Pagehttp://www.angelfire.com/punk/lymedisease/ALS.htmlLyme Disease FoundationPhone = (860) 525-2000http://www.lyme.org/index2.htmlTo Obtain a Dr. Referral: http://www.lyme.org/resources/dr_ref.htmlLyme Disease in the USA and Canada – Links and Informationhttp://www.geocities.com/HotSprings/Spa/6772/lyme.htmlLyme Disease Mis-diagnosed as ALS – Links and Informationhttp://www.geocities.com/HotSprings/Spa/6772/als-index.htmlLyme Disease Resourceshttp://www.geocities.com/HotSprings/Spa/6772/resources.htmlReasons for Negative Lyme Disease Test Resultshttp://www.geocities.com/HotSprings/Spa/6772/als-intro.txtDr. Burrascano’s Web Page - Joseph J. Burrascano Jr., M.D.http://dwp.bigplanet.com/eojlyme ORhttp://dwp.bigplanet.com/eojlyme/pages/view/index.nhtml
Lyme, Spirochetes, Flagyl and the Nitroimidazoles - by Martin Atkinson-Barr, CPhys PhDhttp://mab.webprovider.com/Zhang Clinic – Integrative Healing – Dr. Zhanghttp://www.dr-zhang.com/The Prion Diseases – By Stanley B. Prusinerhttp://www.nmia.com/~mdibble/prion.html“Aspartame” Website – By Dave Rietzhttp://www.dorway.com/
REHABinfo Network – Neuromuscular Disease Information Clearinghousehttp://www.rehabinfo.net/The Glaxo Neurologic Centre http://www.connect.org.uk/merseyworld/glaxo/
Neuroscience on the Internethttp://www.genetics.gla.ac.uk/neil/als.html ORhttp://www.neuroguide.com/
NEUROSCIENCES ON THE INTERNET: USA: http://www.lm.com/~nab/ UK: http://www.genetics.gla.ac.uk/neil/index.html GERMANY: http://ilsebill.biologie.uni-freiburg.de/neuromirror/index.html ITALY La guida italiana a Internet: http://www.virgilio.it/gw/v_mail?virgilio
Neurology in Spanishhttp://www.rediris.es
or send e-mail to: [email protected] the SUBJECT line. In first message line write:SUBSCRIBE NEUROLOGIA+your name.
Gene Therapy Information & News Articles – “Yahoo News”http://fullcoverage.yahoo.com/fc/Science/Gene_Therapy/Gene Therapy Journalhttp://www.stockton-press.co.uk/gt/Journal of Gene Medicinehttp://www.wiley.co.uk/wileychi/genmed/ARIAD Pharmaceuticals, Inc.A leader in the discovery and development of gene therapy, cell therapy, stem cell therapy and protein therapy productswww.ariad.comMolecular Therapyhttp://www.academicpress.com/moltherapyHuman Genome Project – “Yahoo News”http://dir.yahoo.com/Science/Biology/Genetics/Genome_Projects/Human_Genome/Biotechnology and Genetics – “Yahoo News”http://fullcoverage.yahoo.com/fc/Science/Biotechnology_and_Genetics/Bio Online – Life Scienceshttp://www.bio.com/os/start/home.htmlNational Center for Biotechnology Informationhttp://www.ncbi.nlm.nih.gov/Stem Cell Research – Geron Corporationhttp://www.geron.com/index.htmlhttp://www.geron.com/GeronPrograms/Frame.GeronPrograms.htmlUniversity of Wisconsin, Madison – Stem Cell Researchhttp://www.news.wisc.edu/Human Umbilical Cord Blood (HUCB) Researchhttp://www.geocities.com/CollegePark/Quad/4303/ende.html#trialsCytoTherapeutics, Inc. – Stem Cell Based Therapeuticshttp://www.corporate-ir.net/ireye/ir_site.zhtml?ticker=ctii&script=100ALS Program: http://www.cyto.com/als.htmlHughes Institute – St. Paul Minn.http://www.hughesinstitute.org/NeoTherapeutics, Inc. – Development of Products to treat Neurological Diseases“NEOTROPHIN” = Nerve Regeneration Drughttp://www.neotherapeutics.com/ViroPharma, Inc. – Development of Anti-Viral Medicines“PLECONARIL”http://www.viropharma.com/index.htmGuilford Pharmaceuticals, Inc. – Develops products for treatment of neurological disordershttp://www.guilfordpharm.com/intro_nf.htmRussian Approach to Treating Neuro-Degeneration with Amino Acidshttp://www.primavera.ru./english/neuro.htm
http://www.primavera.ru./homee.htm - ALS is on the “Neurology page”, last item
Health On The Net http://www.hon.ch/The Health Network – Internet Directoryhttp://www.healthwave.com/Healthlink USA – Links to Many Health Siteshttp://www.healthlinkusa.comHealthworld Onlinehttp://www.healthy.net/World Health Networkhttp://www.worldhealth.net/OnHealthwww.onhealth.comHealth Centralhttp://www.healthcentral.com/home/home.cfmHealth Bulletinhttp://www.healthbulletin.org/Healthseekhttp://www.healthseek.com/ Health A-Zhttp://www.methodisthealth.com/health/als.htmHealth Care Informationhttp://www-hsl.mcmaster.ca/tomflem/als.html
Health NewsbriefA free weekly newsletter that summarizes recent news articles about health information on the Internet and the use of the Internet in health care. Each issue also has descriptions of the best new health-related Web sites.The newsletter is edited by Bruce Maxwell, author of the book,"How to Find Health Information on the Internet."Subscription instructions:To subscribe to Health Newsbrief, send a blank e-mail message [email protected] Or sign up on the Web at:http://silverhammerpub.comOwner/moderator address: [email protected]
Healing With Nutritionhttp://www.healingwithnutrition.com/Smart Basics – Enhancement Through Nutritionhttp://www.smartbasics.com/gloss.htmSmart Basics Newsletter “Intelliscope” Article = “ALS & Free Radical Damage”http://www.smartbasic.com/glos.news/3als_ant.htmlThe Nutrition Reporter – Jack Challemhttp://www.thenutritionreporter.com/
Vitamin & Herb Informationhttp://www.nutritionfocus.com/Journal of Nutrition – American Society of Nutritional SciencesEditor – John W. Suttie – University of Wisconsin, Madisonhttp://www.faseb.org/ain/journal/journal.html
ASSISTIVE AIDS, DEVICES, AND SOFTWARE:The purpose of the following category is to provide resources for body, mind and spirit that are useful in every day lives for those who face disabling or physical challenges.
Communication Independence for the Neurologically Impaired, Inc. (CINI) http://www.cini.org Devices and Software to Aid ALS/MND patientshttp://members.aol.com/DGGRIM/indexA1.htmlComputer Devices for the Disabled http://www.t-works.co.jp Power Wheelchairshttp://www.permobil.se/Gus Communications – Communication and Speech systemshttp://www.gusinc.com/Assistive Technology, Inc.http://www.pvcdme.com/Adaptive Switch Laboratories, Inc. (ASL)Adaptive controls for mobility, communication, and computer access.http://www.asl-inc.com/Disability and Medical Resource Directory of Disability Productshttp://www.coastresources.com/search.htmlMCTOS (Mind Controlled Tool Operating System) - Technos America, Ltd. LLCWithin the site there are Discussion groups pertaining to Holistic Care, Quality of Life, and Adaptive Technology. http://www.mctos.com News Source for CALS & PALShttp://www.accesslife.com/The Boulevard - A healthcare site for the disabled by the disabled http://www.blvd.com/
Tools for the motor disabledhttp://www.iinet.net.au/~mic/vkb/index_frames.htmlThe virtual keyboard and the joymouse are free for downloading on the Internet for all patients who have trouble operating the computer with the existing programs. Please let Wolfang know [email protected] if you have any questions or problems regarding these 2 programs. Incredible People Magazine – Inspiration by People with DisabilitiesMark Reiman - Co-founder and Editor-in-Chief
Phone: (425) 338-1393 Fax: (425) 338-2833http://www.incrediblepeople.com/Dream LifeDreamlife is the premier online personal and professional developmentnetwork offering an extensive array of individualized coaching, communities, courses, tools and interface with leading experts and peersupport. http://www.dreamlife.comKeep Hope Alivehttp://www.execpc.com/~keephope/keephope.html
NATURAL & SUPPLEMENTARY MEDICATIONS:
The Goulburn Naturopathic Centre - Outline on Natural Medicines & Techniqueshttp://www.gnc.com.au“Life Plus” Dietary Supplements – Suggested for ALS http://www.mindspring.com/~quiles/aahs/als.htm Integrated Healing & Self Healinghttp://www.drweil.com Integrative Healthhttp://[email protected]/integrativehealth.htm Naturopathic Medicine Informationhttp://www.pandamedicine.com/ Homeopathic Websitehttp://members.xoom.com/HomeoSG/ Life Extension Foundationhttp://www.lef.org/http://www.lef.org/prod_hp/abstracts/php-ab161b.htmlALS Protocol: http://www.lef.org/protocols/prtcl-008.shtmlPerlmutter Health Center , Naples Fl – Dr. David Perlmutterhttp://www.perlhealth.com/ALS Info At: http://www.perlhealth.com/chap_16.htmHerbal Medicine page - by Gayle Eversolhttp://members.delphi.com/jaspy1/index.html Herb Research Foundation (HRF)http://www.herbs.org/greenpaper.htmlDr. Andrew Weil – Natural & Alternative Healing Informationhttp://www.pathfinder.com/drweil/Orthomolecular Medicine – Robert F. Cathcart M.D.http://www.orthomed.com/index.htmMedweb Alternative Medicine Sitehttp://www.medwebplus.com/ General information on Anti Oxidants and Free Radicals
http://165.123.33.33/yr1996/sept/research_960930.html The Simple Living Network is an on-line service about publications and tools for those wanting to learn how to live a more conscious, simple, healthy and earth-friendly lifestyle. http://www.slnet.com/default.htmNatural Health Consultants – Alternative Recommendations and Supplementshttp://www.naturalhealthconsult.com/ ORALS Info At: http://www.naturalhealthconsult.com/ALS.htmlNature’s Best – A Biblical Perspective on Healthy Livinghttp://www.naturesbestnews.com/contents.htmAlternative Therapies:news:sci.med.diseases.als Natural-holistic websitehttp://www.UCSofA.comAlternative Health News on Linehttp://www.altmedicine.com/index1.cfm?refurl=http://www.altmedicine.com/altcool.htmNutrition and Health the Alternative Wayhttp://www.healthfree.com/nutrition/Nutrition and Alternative Health Zonehttp://www.lonezone.com/HEALTH/Health.htmlAlternative Medicinehttp://www.alternativemedicine.com/index1.shtmlAlternative Medicine – Natural Healing – Dr. Richard Schulzehttp://www.healthfree.com/schulze/herbs/Gerson Institute – Holistic Treatment of Degenerative Diseasehttp://www.gerson.org/Elemental Analysis – Hair, Blood, Urinehttp://www.gsdl.com/assessments/elemental/appguide/
The Baar Wet Cell Batteryhttp://www.baar.com/wetcell.htmHome Page = http://www.baar.comEdgar Cayce’s Association for Research and Enlightenment (A.R.E.)http://www.edgarcayce.org/On-Line Club for Cayce’s Approach – by Linda CaputiLinda’s E-mail: [email protected] familiarize you with Cayce's holistic approach to Muscular Dystrophy.These remedies are also helpful for MS, ALS, and Parkinson's.http://clubs.yahoo.com/clubs/musculardystrophyalternatives
Health Improvements / Healing with Electronics - Richard E. Loyd, Ph.D.http://www.royalrife.com/Dr. Hulda Clark’s Devices – (By “SOTA Instruments Inc.”)http://www.sota-inc.com/hulda.htmAlzheimer’s / Parkinson’s Treatment Center – Dr. Chaovanee Aroonsakul M.D.
Treatment for Neurodegenerative Diseases including ALShttp://www.internetwks.com/brain/index.htmlE-mail: [email protected] MedicoA Mexican clinic claiming to help about 80% of ALS patients treated http://www.medcure.com Natural-holistic website http://www.UCSofA.com
Quack Watch – Guide to Health Fraud & Quackery – Stephen Barrett M.D.http://www.quackwatch.com/index.html
PRODUCT SUPPLIERS, ETC.Nature's Sunshine Products of Australia Pty. Ltd, have branches in many countries and supply high quality naturopathic/herbal products including Nature's Sunshine HP Grape Seed Extract (OPC). Nature's Sunshine has a website at http://www.nspaust.com.au and can be telephoned on (02) 9894-0111 or faxed on (02) 9894-2422 . Their Australian (NSW) address is P.O. Box 6884, Baulkham Hills Business Park, Baulkham Hills NSW 2153. Managing Director: Mr Stephen Webster. E-mail [email protected]
L & H Vitamins http://www.lhvitamins.com/ are mail order suppliers (worldwide) of many of the vitamins and supplements. They have Internet product information and an 85 page catalogue. Their toll-free number is 800-221-1152 for USA and Canada. Address: L & H Vitamins 32-33 47th Avenue, Long Island City, New York 11101, FAX (718) 361-1437. E-mail Fred Mutzman [email protected].
VitaDrug - All Natural Supplements suppliershttp://www.vitadrug.com SOD (Superoxide Dimutase) For information about a bioavailable source called "Prozyme"e-mail [email protected]
Gaines Nutrition offers over 15,000 nutritional products from hundreds of companies http://www.gaines.com/ Naturelife Productshttp://www.naturallife.com/ALA/index.html Suppliers of a number of products including DMAE http://www.smartbasic.com/cat.supplements/dmae.html A Swedish Vitamin supplier is Golden Neo-Life Dynamite International at [email protected]